recently diagnosed and a bit confused and overwhelmed

catherine27

Hi, I've been getting pains mainly in my feet for a while now but since january they have been getting suddenly worse and very intense. Yesterday I saw a specialist who told me I have inflamatry arthritis and it looks like it is set in now. She reassured me that there are many tablets out there to help (with horrible potential side effects) so my condition should get under control once we get the right drugs and correct dose for me. Im finding everything quite overwhelming at the moment especially as I am in a fair amount of pain and discomfort. I was always under the impression that older people had arthritis and it was a stiffness or dull (but can be intense) ache however lately mine is more like nerve pain with sharp stabs and tingling. It keeps me awake at night for hours. Is this normal? Am I to expect pain for ever? Do most people lead a normal life and are able to walk fair distances if the drugs work? Any advise appreciated.

Welcome to Arthritis Care Forums catherine27 from the moderation team

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dreamdaisy

Hello, it's nice to meet you but I am sorry that you have had to find us. Arthritis has no respect for age - the youngest person I have come across on here with a form of inflammatory arthritis was eighteen months old. Osteo arthritis is the most common form but that is different in nature to an auto-immune kind (of which there are close to 200 types) and is the one that people without experience associate with the elderly - this too can begin with teens or those in their early twenties.

You are on a steep learning curve and no mistake. Once arthritis has moved in it doesn't move out. With osteo (if it's in the right joints) the patient has to wait until a joint replacement becomes an option, that can take years but can bring the disease to a halt. With an auto-immune the immune system has to be suppressed to stop it 'firing up' and triggering the disease. The drugs sound nasty but many of us take them with very little or not trouble whatsoever; there may be initial side-effects but once the body adjusts they fade. I was not offered the drugs for the first five years because no-one recognised I had an auto-immune inflammatory arthritis so now I have osteo thanks to the joint damage. I can distinguish between the pain, the osteo is hotter and deeper, the other more prickly.

One of the secrets of dealing with pain is to distract oneself from it, during the day I use conversation, radio, household chores, telly, reading and doing puzzles. At night I read my Kindle or think of silly alphabet lists - I wake around every hour now due to pain breaking through but I keep my pain relief to a minimum through choice. I can no longer remember pain free and find its feedback useful - if it's rising then it's time to stop whatever I am doing. 'Do a little, rest a little,' is my mantra but I am much further along the road than you and have had years to develop my coping strategies.

Arthritis is confusing, overwhelming, painful, frustrating, depressing and debilitating. It can also be amusing if one is able to see the funny side of life. Friends and family won't understand it either - arthritis affects everyone in our circles. The people on here do understand so come and talk to us. Most hang around on the Living with Arthritis board on here so feel free to post any questions and I am sure more than me will reply. DD

stickywicket

Hello catherine27 and welcome from me too I'm sorry you've had to join us and can understand the feeling of being overwhelmed by the whole thing. Unfortunately most people do have this wholly erroneous view of arthritis which you describe and it can impact on our lives almost as much as the pain and fatigue. Yes, unfortunately, the pain you describe is quite normal though it should be easier once you are established on some proper medication. The side-effects can sound horrific on paper but on paper is where they stay for most people. As long as you are conscientious about your regular blood tests any potential problems will be picked up before damage can be done. Left to its own devices, though, an inflammatory arthritis will damage joints permanently – not a good idea.

The future is very difficult to predict. We are all different. There is no sure and certain path. All that can be said with any certainty is that, if you take the DMARDS (Disease Modifying Anti-Rheumatic Drugs) the progress of your disease, and the effects of it, will be slowed down greatly and you will be able to lead a much more 'normal' life, for much longer, than if you don't. You can ask your GP for pain relief – specifically for some that might enable you to sleep better – but personally I wouldn't aim for 'pain free' as that just seems to involve a spiral of increasingly strong 'paindullers' as many of us on here call them.

And do remember that we on here are probably not very representative. Either because we're older and have had the disease longer (some, like me, with no 'proper' medication around at first) or people with more than one problem or just the unfortunates for whom the meds haven't done much. We are the minority. My advice would be to take the meds and see where they take you. With luck you may find they keep you where you want to be. I hope so.

Sharon2960

Hello Catherine27
Your story so far is very similar to mine! I was diagnosed two years ago, and the pain/discomfort sounds very familiar. I was lucky to be able to see a consultant privately (through work), who very quickly did all the blood tests and scans to diagnose RA. I too had the stabbing and tingling feelings - felt like needles sticking in my toes/feet, other times it was like intense pins and needles. I took prednisolone for about 12 months, then started weaning off them, overlapping onto a DMARD, I also take anti inflammatory and cocodamol when needed. Those meds have brought it all into a better situation, and I've not had any side effects so far. That's not to say that there aren't flare ups - it doesn't go completely unfortunately! When my feet toes and ankles are misbehaving, I find it very helpful to sleep with a soft pillow between my knees - it just seems to ease the pressure. I've also learnt to stop saying, when asked, 'I'm fine!', I do now admit when I'm having an off day, or cancel social arrangements if I'm feeling too tired - if I don't, I know I'll regret it, because I will suffer for a few days! I hope you can soon come to terms with this; this site is a brilliant source of inspiration, and everyone's only too pleased to try to help.

catherine27

Thank you Sharon, it's good to hear that it can be controlled. I've got a very young child and I think with all the unknowns it's just scaring me with the thoughts of what I will be able to do with her. This tingling in my feet is driving me mad. I'm not in pain as such today which is great but the tingling is so irritating and I'm the biggest fidget. I'm sure in a short time I will brush myself off and get on with things but it is so much to take in at the moment and I really appreciate support from people like yourselves. Knowing that I'm not alone and that people are managing it and especially that people are able to get on with life and go for day trips and walks will certainly help. Thank you.

stickywicket

I was diagnosed at 15. W hen my boys were young I, too, worried about coping. I found the trick was to be adaptable, not have set ideas about how things should be but go with the flow. You can't always give your kids what you want to give them but you can always give them what they need ie love and affection and time. They both have sons of their own now and are great Dads.

catherine27

Hi, one question please. I forgot to ask the registrar how long do drugs generally take to work? Or how long should I give drugs before I say they either aren't working or I need to increase the dose? Thanks

dreamdaisy

I have always been told that they can take between two to twelve weeks before we might become aware of a difference. Finding the right med, or combination of meds, can take time and don't expect all the symptoms to completely disappear - in all my years on here I have only come across one person whose RA was so mild that a minimum dose of methotrexate cleared all his symptoms.

The forum can be a little skewed in its perspective because the regular posters (such as myself) are people for whom the meds came either too late to make a difference (my case), weren't available (because when they began the meds did not exist, as in the case of Sticky) or they have OA and are awaiting joint replacements. We are the people for whom things aren't brilliant but we ignore that and get on with things as best we can. Those who are successful with either the meds or new joints don't post because they don't need to, cheerfully forgetting the help and support they received on here and failing to support others because they are sorted.

Arthritis is challenging, not only to us but for those around us. Tiredness is a major factor, lack of stamina another, the quality of our sleep is affected, being in pain is not pleasant. There are two articles on the web which you might find of interest for you, family and friends; they are 'The Spoon Theory' and 'There's a Gorilla in my House'. DD